Autonomic Disorders Consortium (ADC)


At a Glance
  • Status: Active Consortium
  • Year Launched: 2009
  • Initiating Organization: NIH Rare Disease Clinical Research Network
  • Initiator Type: Government
  • Rare disease
  • Disease focus:
    Autoimmune Autonomic Ganglionopathy, Baroreflex Failure, Dopamine Beta-Hydrolyase Deficiency, Familial Dysautonomia, Lewy Body Disease, Mastocytosis, Multiple System Atropy, Neurally Mediated Syncope, Norepinephrine Transporter Dysfunction, Parkinsonism With Autonomic Failure, Pheochromocytoma, Postural Tachycardia Syndrome, Pure Autonomic Failure, Takotsubo Syndrome
  • Location: North America

Abstract

The Autonomic Disorders Consortium (ADC) was established as a Rare Disorders Clinical Research Consortium (RDCRC) in August 2009. The team includes physicians, scientists, nurses, patients, and support groups dedicated to finding new therapies to treat and cure these diseases.

Mission

ADC’s mission is to study autonomic disorders to develop novel therapies aimed at not only improving quality of life, but also altering the course of the disease. ADC is multidisciplinary and draws strong support from its patients and their support organizations. ADC joins with patient support groups to harness the knowledge and energies of physicians and investigators in the major centers where these patients are cared for, so that they can discover ways to treat and to cure these diseases.

ADC plans to meet its goals through the following:

Consortium History

August 2009: ADC established as a RDCRC

Structure & Governance

This consortium is part of the Rare Diseases Clinical Research Network (RDCRN), an initiative of the Office of Rare Diseases Research, National Center for Advancing Translational Sciences (NCATS). The RDCRN is designed to advance medical research on rare diseases by providing support for clinical studies and facilitating collaboration, study enrollment, and data sharing. Through the RDCRN consortia, physician scientists and their multidisciplinary teams work together with patient advocacy groups to study more than 200 rare diseases at sites across the nation.

Funding and scientific oversight for the RDCRN are provided by NCATS and 10 National Institutes of Health (NIH) components: Eunice Kennedy Shriver National Institute of Child Health and Human Development; National Cancer Institute; National Heart, Lung and Blood Institute; National Institute of Allergy and Infectious Diseases; National Institute of Arthritis and Musculoskeletal and Skin Diseases; National Institute of Dental and Craniofacial Research; National Institute of Diabetes and Digestive and Kidney Diseases; National Institute of Mental Health; National Institute of Neurological Disorders and Stroke; and Office of the Director. In addition, patient advocacy groups provide funds for many of the projects.

Points of Contact

Cindy Dorminy, M.Ed., LPN
Consortium Research Coordinator
Vanderbilt University Medical Center
Autonomic Dysfunction Center
1121 Medical Center North
Room AA3226
Nashville, TN 37232
phone: 615-322-2931
email: cindy.a.dorminy@vanderbilt.edu

Sponsors & Partners

Participant/Sponsor

Beth Israel Deaconess/Harvard

Mayo Clinic, Jacksonville, FL

Mayo Clinic, Rochester, MN

National Institutes of Health Clinical Center

New York University School of Medicine

National Institute of Neurological Disorders and Stroke

University of Michigan Medical School

UT Southwestern Medical Center

Vanderbilt University Medical Center


Last Updated: 04/06/2016

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